Update and need advice please!

[carrie235]

Hi Jackie, Rico and everyone else!

I think it's been a while since I've updated and it seems like I have a lot more things going on.  Forgive me in advance for what might be a lengthy post and know that I REALLY so very much appreciate your help!

I'm still seeing my LLND.  I've had two additional lyme tests done about 3 months ago or so.  The culture one through Advanced Labs was negative.  Then, I was retested through Igenex and both my IGG and IGM were positive by Igenex standards but not CDC positive.

My LLND has me on these Byron White ABART drops and that induced a MAJOR herx for me once I got to 20 drops.  I have never herxed like that before.  So, I am still on these drops.

About six months ago, I started having ear ringing in my right ear that also started up in the left ear a few months ago.  This is my biggest thing right now because it is literally driving me insane.  Also, my anxiety levels have been at an all time high too.

I saw my endocrinologist the other day because I know that I have hashimoto disease (she saw on ultrasound and I have the antibodies for it).  She told me this a year ago and said it will be a matter of time before I will start showing symptoms.  My blood work on my thyroid does show it a little slow but not out of range.  I posted on the thyroid forum a few days ago about my blood work and the folks over there think that in-fact my thyroid could be causing some issues.  My endo gave me thyroid meds and told me it was up to me if I wanted to start them or not.  She said she doesn't believe that my tinnitus (ear ringing) is related to the thyroid though.  She also said that taking the meds would make my anxiety worse!  THAT, I cannot handle...I'm really having a tough time with all of this.

Anyhow, I had gone off my Cymbalta that I'd started a year ago because of all this crazy stuff in May because of acid reflux.  I also started adding Gluten back into my diet because without my Fiber One in the mornings...well, you get the picture....I just don't "go".  Anyhow, it was a few weeks after these two things that the ear ringing started.  I contacted my doctor and he said that the Cymbalta is most likely not the culprit here because it started while not on the drug....  I was on it a year prior with no issues...  I restarted the Cymbalta about two or three months ago because I could not handle the anxiety.  I stayed on 20 mg and then upped it to 30 mg about a week ago.  My anxiety has been overwhelming to say the least and some days I just cannot even come to work because of it.  

Oh...I'm going through menopause too....7 months now with no period but I know my hormones are still doing something because a few weeks ago I had really bad breast tenderness with some spotting.

Wow...I know this is long but I feel like I want to give the whole picture..I'm sorry...

Okay...I've seen an ENT twice and he did a pressure test, hearing test, etc...all normal.  I saw another neuro a few months ago and she wanted me to see a Rhuemy (I've been getting episodes of intense joint pain that will come, hang around for a few days and then leave...really bizarre).  I did this and of course...everything normal (except a few blood tests indicating something about thin blood).  She said she would call me on that but I doubt that is causing this stupid ear ringing.  But, I don't have any RA, Lupus, etc...  Also, celiac disease panel was normal which I knew.  So, the Rhuemy and my Endo suggested that I move up my MRI (from Dec 5th to ASAP) because of the ear ringing which I'm going to call UCSF today on.

HERE IS MY QUESTION:  Should I take the thyroid meds or not????  I seriously do not know what to do...

Also, I went to Dr S in San Francisco's office (I have an appt with him on Dec 6th).  I did the blood draw for yet another Igenex test and the CD57, etc. that he wants.  I seriously do not know what to do about that either and if I should go back to him.  I'm worried that this ear ringing is lyme related and that the lyme is doing more damage to my nervous system.  I already have permanent nerve damage in my left leg from this lyme (or whatever this is).  I'm scared.  I don't know what I'm going to say to Dr S....  The other LLND can also prescribe ABX treatment so I just don't know what to do...

Any advice anyone and again, I apologize for the book of issues here....

[JackieCalifornia]

Egad, dear, so sorry you are going through so much --

      Thyroid:  Lyme can mess with thyroid -- it did with mine, and I didn't realize it was Lyme-related.  I went on thyroid supplements, thinking I was just getting hypothyroid as my mother had, and it worked well ... and then suddenly my thyroid kicked back in and I didn't need the supplements any more.  

That's a couple of years ago now, and I'm fine without.  So my situation was different from yours in the details, but in your situation, I'd try them with my doc's blessing.  I found the 'standard' dose was way too much for me, and took little tiny doses (1/4 of a pill), but I'm sensitive to most things that way.  It is very individual, tho, and listening to your body's reaction is important.

Seems kind of odd that your doc said thyroid supps would make anxiety worse --?  It didn't with me at all ... UNTIL my thyroid kicked back in and I couldn't sleep at all.  Problem solved overall, thyroid working, no need for thyroid meds, and a couple of years later, I'm fine.  Everyone is different, tho.  

     HRT:  Are you on hormone replacement therapy (HRT)?  I would try it.  It makes a huge difference in so many bodily systems, including nervous system and mood.  The transition from regular hormone levels through the up-and-down of menopause to get to post-menopause is very very difficult for some, and it was for me, so no regrets in using HRT.  Def. worthwhile.  Once menopause is off the table, then you can taper off the HRT and see how it goes.  Some women do fine with no more HRT, some need it to keep going.  But you can decide that later.  Lyme does mess considerably with all hormonal/endocrine systems, as does thyroid, so you have a double whammy.    

     Gluten:  I've gone off gluten and it is very good for me.  No problem with constipation, because I eat several apples a day, and brown rice or quinoa, and onions, and other things with lots of fiber.  I think you can get fiber products without gluten?  -- but I've never really looked for it.

     Dr S:  I would see him again, until you're *sure* you don't need to.  You have so much going on right now that needs attention, and it doesn't sound like your LLND's approach is taking care of it all.  Docs have their blind spots, but this is an angle of your situation that needs watching over for the near future while everything else gets worked out.

I will send you a PM with a suggestion for a more general kind of doc I found very helpful when I was having a really hard time that the other docs weren't handling effectively.  You are carrying a lot right now, and you are handling it well -- you got grit.  Stay in touch -- thinking of you -- J.

[mojogal]

I have lyme, Bart's and Babs and have ringing in my right ear that comes and goes. I was misdiagnosed with Hashimotos, lupus and MS, Lyme can mimic these illnesses. The anxiety is a symptom of lyme and Bart's. I am on abx and herbs and an anti anxiety med.

I am on thyroid pills because my thyroid is so hypo from all this. You should also know in my case, my blood tests changes dramatically monthly. I was recently hospitalized because within one month I became dangerously anemic and needed a blood transfusion.

I agree with Rico, I think herbs help but not cure. I would go on abx.
If your thyroid is off then yes take the meds but only a doc can say for sure.

So sorry you are going through all of this.

[Ricobord]

I have just a moment for a reply, so sorry if it is short. Sorry to hear you have new things to deal with!

I have had a lot of ringing in my ears. It was one of my earlier symptoms, and it got pretty bad when I was my sickest. (I have Lyme & Bart, and probably Babs, too.)  I found it would get worse in the evenings, during a herx, and when other symptoms also flared up.  

I read somewhere that detoxing seemed to help, so I started on Chlorella.  I am quite sure the tinnitus declined when I would take the Chlorella. I don't know if this is coincidence or a placebo effect, but it seemed to make a difference to me.

The ringing has steadily declined as I have progressed through treatment. It got a little worse when I went off abx for a couple months, and then declined again when I went back on. It still comes and goes, but is mild and usually I hardly notice it.

In my experience, it is just a Lyme symptom that declined with antibiotic treatment.  Since there are times I don't have any ringing at all, I know mine is not permanent.  IMHO, I would start antibiotics again if I were you, before it can do any more damage.

Another thought...you are the third person I've heard of with Bartonella who had noticeable herxing on A-Bart. I wonder if your anxiety flare-up is part of your herx. It sounds like you need abx for Bart, too.  I think A-Bart beats it back, but I don't know if it can cure it.